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Johnny Davies to complete the 350 mile Arctic Ultra Marathon

On the 20th of March 2015 Jonny Davies will be competing in the 6633 350 mile arctic ultra marathon in Northern Canada in aid of three separate charities. One of those charities is the Smith-Magenis Syndrome Foundation.

Jonny has a younger sister Clare who has SMS and wants to raise awareness and funds to support the work we do.

Ruabon boy finds words to tell mum: 'I love you'

Clare Barker, 44, who lives near Ruabon, have spoken to their local paper The Leader about her young son Toby’s tear-jerking breakthrough. Clare and her family have been raising awareness for Smith-Magenis syndrome ahead of the Chester Half Marathon on May 18 which Clare will be running to raise money for the Smith-Magenis Syndrome Foundation.

Clare Barker to run Chester Half Marathon for Foundation

Good luck to Clare Barker who is running the Chester Half Marathon on Sunday 18th May 2014 for the Foundation.

“I am the mother of a 6 year old boy who has Smith-Magenis-Syndrome. I was a happy 5km runner until I decided I needed to challenge myself to help raise much needed funds for our small charity, so I am now on my third Chester half marathon (4th half including Birmingham).

I am doing this not only for vital funds but also to raise awareness of this rare syndrome. I have managed to bribe a good friend of mine to do this run with me and Amy will be completing her first ever half marathon. In fact she had never ran more than 5km before so good on you Amy and go girl !!!! Any amount would be truly amazing and much appreciated".